When Lia Kawulok conceived a baby with Down syndrome, her life changed forever. But the overwhelmingly negative medical opinions she received were incomplete.
“He can still thrive,” she said of her 3-year-old son, Manu. There were and are challenges, but the joy he has imparted to her is immeasurable.Now, the smiling toddler has been selected as an ambassador to the public and others with the condition through Nothing Down – an organization dedicated to changing the optics surrounding Down syndrome.
Manu – who loves football, basketball and his toy kitchen – can speak, but uses sign language to fill in some of the gaps in his communication.When Manu was a baby, Kawulok immersed herself in the Boulder area’s community of down syndrome parents. That’s how she found out about Nothing Down.
Early on, she felt that Manu was supposed to be in the public eye – both to show the world an example of a happy, thriving child with Down syndrome and to educate the masses on the realities of the condition.
“Helping new parents when they get a diagnosis or who may be going through something you’ve already gone through,” is a big part of what Kawulok does in terms of Manu’s ambassadorship.
“Right now, because he’s so young, he just kind of shows what kids with Down syndrome can do,” she said.
Manu attends the TLC Learning Center – a pre-school in Longmont.
“He loves school,” Kawulok said. “In the morning, he’ll sign school, friends and outside.”
Matt Eldred – the school’s executive director – said in eight classrooms, the school serves 90 children with mixed needs aged from 8 weeks to 6 years old.
“Typically, our balance in those classrooms is 60% typical and 40% children with special needs,” he said.
Eldred said a classroom is staffed by two teachers and a team of occupational, physical and speech therapists. He said that team is there to serve the needs of every child – whether they have special needs or not.
Children – especially ones with special needs – are often more receptive to these types of therapy in a classroom setting than in a clinical one, he said.
“We know a lot about down syndrome now because the number of people with down syndrome has been steady for 30 or 40 years,” said Charles Hoeffer, who researches behavioral genetics at the University of Colorado Boulder.
As those with Down syndrome have aged, Hoeffer said people have learned how to manage the world’s most common genetic neurodevelopmental condition.
“There was a belief for a long time that Down syndrome would become a condition of the past,” Hoeffer said, because “prenatal testing enabled the detection of fetuses with Down syndrome” in a timeframe which allowed prospective mothers to terminate their pregnancies.
“What ended up happening is that termination rates got to about 90%, but then stabilized,” Hoeffer said. “Even with the ability to detect it early, people still carry the pregnancies to term… come hell or high water.”
Kawulok has been focused on Nothing Down’s Dear Doctor initiative, which encourages doctors to deliver diagnoses in a compassionate way. The organization also wants the medical world to give prospective parents the resources they need to make an informed decision about terminating the pregnancy.
Kawulok said when breaking a diagnosis to a parent, doctors will often mention “low quality of life, heart problems and lifelong difficulties,” as defining elements of the Down syndrome parenting experience.
Often, she said, parents-to-be will leave the doctor’s office not understanding the joy and fulfillment that come with the life-long challenges of caring for someone with Down syndrome.
“I think that goes along with a lot of parents deciding to get an abortion.” Kawulok said. “They don’t see a good life and future for their kids.”
“I firmly believe that everyone deserves a chance at life,” said Kawulok – a practicing Catholic.
“I would support someone if they chose otherwise, but it’s hard for me to put myself in that situation,” she said, “because I could never choose that.”
Hoeffer said the condition is caused by the triplication of chromosome 21.
“It doesn’t really have a single gene cause,” he said. “It’s really just a problem with having too much of an entire chromosome.”
There’s been a huge variety in outcomes for those with Down syndrome. Hoeffer said the medical and academic communities aren’t completely sure why yet.
Many, he said, have theorized that the degree to which somebody’s twenty-first chromosome is triplicated has an impact.
It’s also assumed, Hoeffer said, that a person’s genetic background aside from their twenty-first chromosome can change things. The way a person’s other genes interact with the mutated portion of the chromosome has a big impact on the phenotypic expression of thecondition.
Hoeffer also said “exposure to really good prenatal care,” and “good care after the child is born to prevent known difficulties or complications,” can go a long way.
“We really teach here, that as a parent, you are your child’s first and best teacher,” Eldred said. “You are also your child’s best advocate.”
That’s why Eldred believes the Kawuloks are, “a very good model of what the potential for children with Down syndrome can be.”
“I think it’s really clear that children with Down syndrome can be successful,” Eldred said. “Finding the best fit for children like that early on may help them be successful adults later in life.”
He said they are often also “more open, more trusting [and] more compassionate. I think we can learn a lot from children with special needs.
“If the world were more like children with special needs,” Eldred said, “the world would be a very different place.”